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Putri Juneita Johari

HAVING a sense of humour and quick thinking would stand you in good stead no matter what you choose to do in life. This is especially important when you’re a caregiver dealing with an ailing loved one who’s capable of surprising you — no matter how prepared you think you are.

My eldest son Omar, a non-verbal young man with special needs, wears special shoes that fit a splint on his right foot (necessary to keep his clubfoot in the correct position). His beloved pair of shoes had worn out terribly and he needed a new pair.

We went from one shoe shop to another looking for something that fitted his requirements, but it all pointed back to the fact that he needed specially made shoes. This time the Internet couldn’t give me the answers I needed.

This hunt for a special-needs shoemaker started because we thought the regular shop we went to had closed. Many shops we visited catered for children but hardly anyone had anything for adults. It was easier when Omar was smaller and younger. I could just buy two pairs of the same style in different sizes because the foot with the splint needed a larger shoe.

We finally found a shoemaker who said he could do these special shoes for Omar. Since the shop was in a shopping complex, we decided to turn it into a half-day excursion that included lunch out and a bit of shopping. It was, after all, the school holidays and the Christmas decorations made everything feel so lively and festive.

I wanted this outing to be a little treat for Omar and his caregiver — the holiday we’d not had together for a while because Omar doesn’t do well away from everything familiar. We decided to do everything early, including having lunch to avoid peak hours where there would be too many people. The crowd would bother Omar, and the staring would bother me.

Omar was excited. He knew what we were about to do was out of his daily routine. Firstly, the car ride wasn’t to send him to the centre that he goes to everyday, a place where he has friends and teachers who care for him. As we left the car to enter the shopping complex, Omar chirped happily at the sights, sounds and smells of the festivities.

When he had to get his feet measured, he wriggled and giggled uncontrollably. When he’s happy like that, his senses become heightened and everything tickles him, whether it’s a sound or a touch.

A simple thing like being measured, which ordinarily would take less than five minutes stretched to a long 20-minute ordeal. My helper had to whisk him out of the shop quickly so that he wouldn’t roll out of the wheelchair or tumble the displays with his flying kicks.

I settled the payment and arrangements, and then took Omar to a little restaurant that was still fairly empty. He’d calmed down and I thought he might enjoy some lunch. The food came but he shouted and refused to eat.

People around us stared and were uncomfortable because Omar was big and loud. So I decided to pack his food and go home. He was certainly having a reaction; neither he nor his environment suited each other.

CHALLENGES A-PLENTY

I paid for the parking ticket while my daughter and helper tried to get him into the car. That was another ordeal because Omar just refused to get out of the wheelchair. He had a temper tantrum and spun the wheelchair round and round. The security guards came forward to assist, but seeing men in uniform made Omar scream. So they stepped back and just watched from a distance, ready to come forward if I asked them to.

By this time, my patience was wearing thin. I was distressed by Omar’s behaviour and I was also conscious of the parking ticket’s grace period to exit. On hindsight, I know that shouldn’t matter because I could always explain to the parking management. But at that time all I wanted to do was get out of there. Fast!

We had to somehow lure Omar out of his wheelchair and into the car. He was too heavy for us to lift him without anyone getting injured. First we put his bag and his favourite magazine on the seat. He peered at them before looking at me and laughing — totally unfazed and uncooperative.

Then we had an idea! He loves his shoes and doesn’t like to be uncomfortable. So we took his shoes off, showed them to him and tossed them into the car. Then we took off his socks and tossed those in too. He looked at them, then at his feet, and then at me. He stood up immediately and got into the car.

I’d never been more relieved! We quickly packed his wheelchair and drove off while Omar tightly hugged his shoes all the way home, humming to them as though comforting the shoes and himself too.

Putri Juneita Johari volunteers for the Special Children Society of Ampang. She can be reached at [email protected].

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